27 Mar 2009

We married 13 years ago, and are off, leaving the children with my dad and step-mum (blessed, wonderful, amazing individuals that they are) and escaping everything tiresome, distressing and difficult for a few days of rest, food, wine, beauty and fun.

But first I will have a day of running around like a wild thing, sorting and tidying.

Gordon and I took Duncan to the doctor yesterday. In my referral letter, they'd said that the building was being renovated in parts so we were to use an alternative entrance and that parking might be limited. Duncan likes going to this hospital, calls it the nice hospital as he likes playing with the toys in the waiting room.

Unfortunately, we were told to wait in a different area, crowded with people of all ages. Duncan was not pleased and wailed and cried and shouted. I asked the receptionist if we could go the other waiting room as it's what he's used to and what he expects when we go there. I hadn't known it would be so different and he was unprepared for such a change. I was told we could not.

So he cried and shouted some more and the others waiting either avoided eye contact or adopted that pursed lip, disapproving look at my "very naughty" boy and my inability to "control" him. I told Gordon (who was not able to help him either) that I was going to wait in the car and asked him to get me when they were ready. Instead he gave the receptionist our phone number and joined us in the car. After a few minutes we were called out and led to the toy filled waiting room which I'd wanted to go to originally!

What an avoidable load of hassle. Eventually we were seen, a full hour after our appointment time, and in a tiny room located right beside a load of builders wielding jackhammers and drills. All this conspired to make a very unsettled boy. Duncan played for a while but soon got upset again and was looking for a toy train he played with at a previous appointment there. I was utterly frazzled and Gordon wasn't doing much better.

I looked after Duncan in a quiet hallway while Gordon talked to the doctor. We're going to get some involvement for the first time ever from the social care team, who might be able to help us find some activities for Duncan. We also got a prescription for a methylphenidate drug at the lowest dose. I'll get the medicine early next week and we shall try it out, that is if I can get Duncan to take it, and see what happens.

25 Mar 2009

I listened to Stephen Nolan's bumptious phone-in show on local radio this morning. He had a few people on discussing our climate change denier Minister for the Environment, Sammy Wilson and his latest kerfuffle in Stormont. The Belfast Telegraph reports that his department admitted that he, "did not consult any scientific articles when deciding not to air the Westminster-sponsored Act on CO2 ads."

Naw, our Sammy came up with that grand idea off his own back. He knows better that them scientists with their ungodly evidence.

He called another assembly member the 'carbon king of Stormont' because he lives 100 miles from the parliament building and has to drive, public transport links in NI being utterly pathetic, and getting worse the further west you go.

But then, once the drone of whinging politicians blended to innocuous background noise to my kitchen cleaning endeavours, Johnny Ball was on the air again, blustering about matters he doesn't understand and ruining my good opinion of him.

He used to be an exuberant presenter of children's TV shows about maths and science, and is fondly remembered by nerdy types of a certain age:

But he has turned cranky in his old age. He said today that "Sammy Wilson is right."

"People are talking about a carbon footprint. Carbon dioxide is half as heavy as air again. It falls to the ground and it feeds the plants. A tree is made of CO2, it puts the oxygen back into the atmosphere and takes the carbon. 85% of every tree is CO2...When you're talking about CO2 you're helping the plants, you could say you're greening the planet."

I think that here, Johnny has employed the logical fallacy known as the WTF? fallacy.

But he goes on (and on and on) and eventually, near the end of the interview, he gets to the "dangers of scientific consensus." He even has examples, 100 years ago, so Johnny says, all the scientists agreed about eugenics. I think he's trying to make the point that we're more enlightened now and have moved on from those bad old days, something I'm not so sure about. He also mentions how in Darwin's day, the consensus was against him. But he neglects to mention that the science consensus changed to adopt the new ideas when they were explained, understood and backed up by huge amounts of evidence. Does Johnny really think that scientific consensus is always dangerous? What about our ideas on gravity, germ theory, what about consensus on units of measurement? What a ridiculous argument.

Silly old duffer. And why on earth has he been asked to come on to the programme to talk about climate change? Is it really reasonable for the BBC to allow this man 7 minutes to talk a load of old nonsense, just because he was once a wacky kind of kids TV presenter?

21 Mar 2009

I've had better days. Sure I've had worse, but I'm worn out and feeling negative. Dealing with Duncan today was no picnic. He's been shouting, screaming, wanting to have things go his way and making loud protestations when they don't or can't. My head hurts from the noise. He's full of plans to act out songs and not everyone wants to play along. Lady had 2 girls over to play for a while and he was roaring and thumping on her door to get them all to line up and pretend to be marching ants or something. Later, he threw a toy and it hit a picture hanging over our bed, shattered the glass which scattered all over the bed and floor. Thankfully he'd been standing in the doorway and wasn't hurt, and it had been an accident but it made me feel closer to overload. He was very sorry and drew one of his apology pictures.

But he's been acting, I think, more loud and hyperactive recently. It might be an effect of winter weather and not having enough time outdoors, which will improve with the better weather. He has an appointment with the paediatrician soon and I have been reading about people having ADHD with autism and looking into stimulant medications. It seems from the trials that children with both conditions can benefit from very small doses of stimulants like Ritalin. I will talk to the doctor about the possibility of trialing one of these drugs with Duncan, using the smallest possible dose and keeping a careful eye on the side-effects it might have. Though I'm anxious about using such medication, at least I can be sure these drugs are approved for the treatment of ADHD. I think it's worth trying it out as it might help him concentrate more on tasks other than film making, and help him learn more easily. And if it doesn't help or has side effects, there is no noted risk to suddenly stopping the medication and we can try something else. There's always something else to try, drugs are NOT "my last hope" or anything. If this fails or if I'm advised not to try them, we'll be fine.

On a related matter, I was tidying a cupboard and showed Duncan some pictures of his old school, not the one he went to last and which he asked to leave, but the school before that which he had always (as far as I could tell) enjoyed. I had preferred that school too and only moved him as the 2nd school had opened a dedicated autism unit which I'd thought would benefit him more. But the home-school communication wasn't as good as at school 1; there were a few notes home that baffled me. For instance, I was told once that Duncan wouldn't settle down and insisted on "running around too much" during a PE class in the school gym!

Anyway, Duncan asked to go to the school and named one of the children in the picture. This is a child he hasn't seen or heard about for 3 years! I asked him in surprise if he wanted to go to school, and he said, "go to school and play with the toys and then come home again."

I got thinking, often a dangerous pursuit. Perhaps it is time to try out school again for him. (Lady and Thomas are utterly uninterested in school.) While I can take him out with me, there are no groups around here that he can be part of, unlike his siblings who are in various sports and social clubs and who see their friends from the street regularly. He went to a Saturday club for learning disabled children twice but he was just too autistic for them, and anyway, it closed.

There are pros and cons no matter what I decide, and I just want to know what is best. Again, if he does go and is not happy, I can simply stop sending him, but is it worth the potential upset to find out?

I'm going to contact the educational psychologist and ask to meet her again and then I'll take a tour of the schools and meet the teachers. He will have to go to one of the "special" schools as there is no such thing yet as proper inclusive education and he would flounder at a mainstream school. Besides, I'm not counting on school to provide the main aspects of his education, he'll still get that at home. I just want him to have a chance to go out somewhere and be with other people now and then.

19 Mar 2009

I spent most of Paddy's Day '09 with my 2 boys. We baked cakes then covered them with green icing and jelly beans. A few special "chuckie"cakes (don't bother me with the spelling M, I'm being ironic!) got the green, white and orange beans and these we took to my dad's place where we were having dinner. We all had a lovely evening, Thomas played Kerplunk with anyone willing to give him a game, Duncan jumped on the bed and pulled the rail off a wardrobe - oops. Daddy said that he had to sort his clothes out anyway. Right. Duncan also enjoyed a few tickling and tumbling games with his Granda, especially "throw me over the balcony," an exciting swinging game and "take him away" in which he kisses Granda who pretends to want rid of him and I or another volunteer try to prise him away. They invent new ones every month or so and it's all very exciting.

Duncan headed off to the loo taking the Argos catalogue with him so I knew it was a sit-down assignment. A few minutes later we heard pouring water and he'd decided to run himself a bath. He had a lovely wee soak, splashed the bathroom and got himself all nice and clean again.

Eventually I decided I'd allowed everyone to enjoy the pleasure of my boisterous boys for long enough and we headed home. It was nice to be asked out, much better than sitting home all day.

In the car, Thomas was muttering to himself then wondered aloud what his last word would be. He'd had a first word, he explained, so it made sense that he had to have a last word too. I said that my last words would probably be something like, "just another slice please!"

Later in the evening Lady returned after a very successful trip to Donegal with her pals. Unfortunately she arrived at that part of the day when I've just about run out of cheer and good will and I was giving out to Duncan for some mess or other he'd created and she was saddened to see me cross and sadder still that her Daddy would be away for the next 3 nights for meetings and lectures. But they had a great chat the next morning and she felt better again.

The next day we ladies watched Pride and Prejudice (Ehle and Firth version, yummy) while I combed her matted hair for hours. It's all nicely plaited again now. Then while the gymnasts in the family did their thing, Duncan and I went shopping, he sitting in the Tesco trolly for disabled children. Right by the trolley park was a mound of Easter eggs in Thomas the Tank boxes. Uh oh, chocolate and Thomas combined, a potent mix. He picked one up, examined it and said, "Thomas! Duncan likes it the best!" Then he thought for a while and said, "and Thomas likes Doctor Who the best and Lady likes Bratz the best." (He's a few years out of date with that last, but it's nice he's thinking of them.) I asked, "What does Mummy like the best?" He answered, "Mummy likes Duncan the best" earning a big smile and affirming hug from me.

I'd say the parade in Dublin will be good, but I've never been to the Belfast one and have no intention of changing that habit. Our trip to a local parade last year ended in mixed success. Since I'm at home with just the boys, we're just going to make some little cakes and cover them with green icing before devouring with a nice cup of tea.

We'll go out to see the my dad and step mum later and I think it's much wiser way to share the day with people who care for us and who won't tut at non-normal children.

Also, I've been encouraged/persuaded/forced to start up a blog for Duncan who wanted a blog of one's own. Go and have a look and say hello. You never know, he might even not ignore you!

16 Mar 2009

We've had a few friends come to visit in the past week or so. First, a friend of Lady's, whom she met at gymnastics stayed over for 2 nights. The 2 girls stayed up really late on Friday night, chatting and giggling then both had collapsed in a heap by 7pm the following evening. Thomas did his ju-jitsu grading (he's on the orange belt now!) despite Lady and her pal going off for a walk before we needed to get out to the sport's centre and sauntering back home 20 minutes after we should have left. I was one angry mummy as we eventually got on our way. She's a good hearted girl, the very best, but phew can she make me mad with her day-dreaming forgetfulness. In fact, she reminds me of myself at her age, same desire to wander off on explorative walks, poking at holes by tree roots, collecting leaf and flower samples, and best of all, looking for wriggly things in ponds. Lady had landed back with a jar full of frog spawn that I then had to get a tank for. Kids eh.

Our next visitors were some good friends who live close by and who also are learning without school. Lady and Thomas enjoyed their company greatly. Duncan wasn't much interested most of the time, but he did get them to join him as he played out the scene from Snow White where the 7 slovenly dwarves return from work and are surprised to see a pretty girl has opted to cook and clean for them all. Patriarchy, bah!

As so often these days, Duncan requested that I film their escapades. He often edits bits from these films (at least those involving just my own brood, other people's children are safe) cut with Disney film pictures. He's got loads of them on YouTube now. One of his Robin Hood series had the following great slide:

Robin HoodThe Speicel A Dishon

I'm sure you can decipher his invented spelling.

Another family were round later for a few hours. These people live just up the road and one of the 3 children is autistic. I got to meet him briefly once as he's been at school where he stays for 3 (or 4?) nights each week when his mum and siblings were around. I hope he can visit properly soon, but I'll have to do something about Pippi as he's really scared of dogs. His mum is lovely and we got along really well. She shared my outrage over the autism manure book and the father writing that he'd prefer his kids had cancer, not autism.

Here are a few videos I took a couple of days ago showing Duncan's self devised Pinocchio outfit. Unfortunately this costume did involve the mutilation of a few innocent tops to achieve the correct layering effects. But the clothes involved were very cheap and just about too small for him anyway. I've asked that he gets my permission before cutting his clothes up in future. Anyway, it's my pleasure to introduce, Pinocchio, the dancing puppet and his pet dog Pippi.

As I was writing, he told me to out his Rugrats picture "on the blog," said with such a proprietary air. I aim to please:Lady's gymnastics friend's mum kindly took her out with them to watch her first ever ice hockey match which starred the Belfast Giants. She arrived home elated, with a signed photo of some handsome, burly hockey player and painted stripes on her face. I'm not even sure if her team won, but they all certainly had a great time. She says that I have to take Thomas to the next match as he'd love it. She's been staying with the same family at their mobile home in Donegal since Saturday. I hope they aren't getting sick of her! She's called home twice to say what a great time she's having. No doubt there'll be further details on her own blog presently.

Gordon's Mum offered to babysit the boys on Saturday night. Not surprisingly we jumped at the chance to get out together and headed out for a really nice meal. It was kind of a special evening.

This morning Thomas wasn't feeling the best and though I'd hoped to take them to W5 to meet up with friends, after Thomas forcibly expelled his stomach contents orally all over the dining room floor, I decided that we'd be better to stay put. So I cleaned up and when he was settled again, I read him a few more chapters of Harry Potter 3. Later he declared that he was feeling a bit better but, "I'm not 100% yet, more like 50% so I've 50 still to go." How do you know when you're raising a nerd?

I must end and tidy. Gordon heads off for the rest of the week for meetings and lectures here there and wherever. No doubt, the fun and games will continue without him.

7 Mar 2009

What do people think of the term "special needs" to mean disabilities? I don't like it. I know it's in common use. Disabled children in UK schools who need them are allotted (often after a fight from their parents against intransigent education authorities) statements of special educational needs. When I lived in outer London, we used a toy library and went to a fantastic playgroup at the Project for Children with Special Needs. In fact, in my old Borough (Richmond Upon Thames) there are a whole load of services with the "special needs" label.

It strikes me however as an anachronistic term. I don't know of any disabled person who would describe themselves as having special needs, sort of like normal people but with extra, special additional needs. It is a term I think, only parents and professionals would use and usually only when referring to young children. It has a very infantilising ring to it, to my ears anyway.

I am asking these questions now as I recently learned (via jypsy and then on Dave Hingsburger's blog )of a Facebook group created to tackle the hundreds of other Facebook groups and pages whose aim/title mocks disabled people, groups started by people with a droll wit of almost Wildean proportions with titles like "Hott Retardz" (that's humour to test one's pelvic floor right there).

I have exchanged a few messages with the group's creator about the title and asking if she would consider changing it, while acknowledging the laudable aims of the group and her right to utterly discount anything I would have to say.

In a reply she explained that special needs is the expression she always uses when referring to her daughter and that she has asked "many friends with siblings and children with various issues and they prefer special needs."

I have to highlight here the expression, "nothing about us, without us."

It is not good enough to just ask parents and siblings. Disabled people themselves must be central to the issue and effort. There are plenty of disabled people who are happy to take part and explain their concerns on this Facebook group, but these people have not been treated well. I have witnessed 3 different disabled people come in to discussions on this group who have all been told that their thinking is amiss and that they need to learn from parents what the right way to talk about themselves is.

I have also seen many people (all parents as far as I can see) complain about the discussion on words and terms as distracting from action. This makes no sense to me when the point of the group is to tackle the use of words like "retard" used in offending ways.

I'm was also surprised to read her view that to, "many people we asked, disability had a more negative connotation than special needs."

Andrea Shettle posted publicly to the group, asking the same question politely and gently. She was attacked by one group member and told that she was being condescending and stuck in the seventies for preferring the expression "disabled people" or even "people with disabilities."When I questioned this person's dismissal of Andrea's questions and meanings and pointed out that it might be worth listening to and learning from disabled adults, he told me that I must be happy to be spoken down to.

Amanda Baggs then stepped in with a detailed and powerful series of posts explaining all the issues about how parents have too often ignored and marginalised the efforts of self advocates, about the important role we have as allies, and how damaging it is (with several eye-opening examples) to claim that we parents are at the "heart of the disability community." She explained that her posts were lengthy as she has difficulties in summarising her thoughts and that she wanted to be as clear as possible on an important and complicated issue.

The same poster who had earlier been rude to Andrea now claimed untruthfully that Amanda was attacking him, he put words into her mouth (that she wanted to let people insult his child!) and he rudely called her long winded, but did not engage with a single thing of substance that she wrote.

Wanting to tackle disablist practices and injustice on Facebook is great, but it has to start in this group before I can be part of it or invite my friends to join. Nor can I be part of a group that thinks the very word "disability" has negative connotations.

5 Mar 2009

On this day 13 years ago my mother, then aged 49, died after living with cancer for 10 years. I think about her very often, and not with sadness either. I'm lucky enough to have had years to know her, to be raised by her and my Dad in the knowledge that we were all completely loved and cared for.

Mammy (as we all called her) was amazing. It's hard, no impossible, to explain just what she meant to all of us who were close to her and loved her. She could crack you up with a little aside about someone or something, she was smart but I don't think she knew it, having been convinced by one too many nun of her academic inferiority at school. She was to me, utter safety and comfort. She believed in me and supported me, hassled and nagged when necessary. She wanted the best for us and though I know that in one thing I have let her down, I have turned away from what she cherished most in life after family, I think she'd still be proud of me now...though she'd despair of my much less stringent standards of housekeeping.

I miss her much, I miss her when there's a big event, a marriage, birth or death. Oh how she would have loved her grandchildren! When Lady was born, I was blown over by the knowledge that I would be as big a presence in the life of this child as my mother had been in mine. I miss her some days just out of the blue when something makes me remember her, a game show (she liked to see the prizes spread as fairly as possible rather than one winner taking it all) or an overblown song performance (she was irritated by singers throwing their arms around and going all theatrical) or when I catch myself parroting a saying of hers.

Some of my most prized possessions are our old family photos and the letters Mammy wrote to me when I was away at university. In these, she wrote as she spoke, same little phrases and colloquialisms (the very things the unenlightened nuns might have marked her down for). I can hear her voice clearly when I read them.

She didn't have long enough, and too much of her time was hard and involved awful suffering. But she was our Mum, the best you could have and an inspiration to me. I think I've perfected her hugs and kisses, and there's a fair number of choice chastisements that I'm passing on faithfully.

About this Blog

Curious, enthusiastic and affectionate mother of 3, one of whom is perfectly autistic, I find great joy in each of my children and strive to help them learn and grow in an atmosphere of love and acceptance of their differences, difficulties and strengths.

The children's pseudonyms reflect my autistic son's one time love of all things Thomas the Tank Engine.

This is my personal blog so all posts and opinions shared are my own and not those of my employer.